Part 13: It's been a while...

Hello again.  Before we go any further I’d better tell you how I ended up in here.  One day in May after the morning routine I fell asleep and no-one could wake me.  The next thing I remember is two men and Sophie in an ambulance, Neil was following behind in a car apparently.   I don’t remember arriving at hospital in fact I don’t remember anything until the next day and then for only five minutes.  Neil was sitting by the bed with some doctors.  Apparently during the night I stopped breathing and was resuscitated twice.  Neil said they are putting a tube down into my chest as a bad chest infection was what I had.  The next thing I remember was waking up in ICU.  The next few days are a blur and when I was awake the doctors told me they would fit a tube blah blah blah.  A tracheostomy was performed and I now breathe entirely through a tube into my throat and lungs connected to a ventilator. 

As far as the Motor Neuron Disease goes, the only parts of my body I can still move at all are my eyes, eyebrows, and mouth in as much as I can just open it or smile.  But I can feel my facial muscles weakening now, though I continue to feel every single part of my body.

I am writing this blog entirely on an Eye-Gaze tablet.  It’s a computer mounted over my bed that tracks my eye movements on a keyboard on the screen a bit like a smart phone set-up, and stores my words, or speaks them a bit like Professor Stephen Hawking but with a female voice!

Other than moving my eyebrows, this is now my only way of expressing anything, myself.

Over six months later and I am still here in ICU.  We got good news a few weeks ago that there seems to be some funding being approved for nursing staff so I can go home.  We met the head of a nursing agency who are recruiting nurses and I also hope to have back my two carers who helped Neil a few hours a day before at home – who I now think of as friends, we have such a laugh together.  Next to Neil, I miss them so much.  So if you know of any nurses with experience of MND and tracheostomies who would like to work between Gorey and Wexford Town, feel free to offer whatever it will take to get them to work for me so I can get home!   Make whatever arrangements you like – I won’t interfere or ask about it – and good looking male nurses may apply too.

Sitting in bed in here with so much time on my hands, it’s amazing what goes through your mind.  I’ve thought a lot about my Mum’s Dad, my Grandfather Corporal William Henry Jones.  I don’t think any of us really know what it was like for them in World War 1, and the fact that those who came back, just came back and got on with life.  He was an amazing man, all the information we have bears out the fact that Mam never had anything negative to say about him.  Then unfortunately you come to his death certificate.  He died in Ballinasloe mental hospital having Alzheimers Disease – a very sad end for a man who had fought in France in WW1 and gave up his family for the love of a Catholic Irish woman.  He was also a gifted musician and I’m proud of him. 

Sadly my own mother got Alzheimers too when she was just 50.  When it started to affect her, black humour got us through it.  In my Mum’s eyes I was her sister Josephine and my sister Catherine was her best friend Emily.  I (as Aunty Josephine) was the translator in conversations of what my Mum was saying in her confused way.  Or as Mum would say - with me in that role - to the real Aunty Josephine, “Tell that old woman this conversation is not her business!”

My youngest brother walked into the kitchen one day, Mum looked at me and asked me who he was?  Aunty Josephine told her “That’s Liam, your youngest child.”  Mum asked “How many children do I have?”  To which I replied “Eight”.

“Eight?” said Mum.  “No I don’t, only a hussy would have eight children!”  I almost swallowed my hand trying so hard not to laugh out loud.

Lots of mad conversations like this took place and you have to laugh – you can’t spend your life in tears.  It seems I’ve got the dodgy gene that has led to my Motor Neuron Disease, but at least I got the good skin-gene too!  I hope I have taken the bullet for this generation of Lynch’s, though we have lost one of my older sisters, Norah, to breast cancer at the age of 47 – one day before her birthday.  Typical Norah; a great, big sister who I will tell you about another time. 

Having lost a sister I know what my other brothers and sisters are going through now, with me.  Don’t worry guys, I plan on being alive for a long time yet – if only to give Neil more wrinkles, or perhaps more kindly, laughter lines!

I will be back writing more when I can.  This is very tiring and has taken me several goes to complete.  Don't forget to join my Facebook Group where other bits and pieces are posted, mainly by Neil, just to keep my family, friends and supporters up to date between blogs.

Thank you for reading and thinking of me.

Ciao!

Eimear X

Part 12: Bits 'n' Pieces

Friends, what would we do without them?  I have been very lucky my whole life and have the best friends ever.  Starting as a little girl I had my younger sister Catherine who I could boss around and bend at will to do, and be, whatever I wanted – usually nothing more exciting than another doll at my tea party or a doll to dress, except this one was alive and I must have wondered why the other dolls just sat still and said nothing!  I would not try and dress Catherine now, not that she would let me!

Growing up I had great friends, some of whom are still friends today – like Ken, and Maria Mc – and some others that I have gathered along the way like Ben, etc.   All of them have been really, really good to us both now.  It’s been a blessing to have so many  - too many to mention all of you by name but I know you all know who you are and how much you mean to me, and how much all of you have done to help.  It means so much to me and Neil, so a HUGE BIG HUG to you all!

Plus of course my friends, by proxy initially, who I’ve come to love too in the world of Hot Rod racing.  I never would have thought that my photo would be on the back of a Legend race car – that may be a good deterrent to stop anyone rear-ending Tim!

As you will have seen from my Facebook group, the extension is moving on, albeit a bit slowly until this week.   But man!  I could never have imagined the amount of dust through the house; it really is never ending…  Hopefully we will be all installed in the new room soon.

I’m all sorted for the Ebola Virus over here.  I will have my ‘Nippy’ oxygen machine at the ready provided my brother Ronan – who was eyeing it jealously the other weekend – has not stolen it.  So much of my life plugs-in now, I’d say in the new extension we have the bedroom with the most electric sockets ever!  In just the one room we’ve had 24 fitted – mad – oh well.  The electricity bill is giving us bigger numbers every month – at the rate we’re going it will soon look like the national debt of a small country.

The new football season is upon us and my team – Crystal Palace – started with no manager.  Everyone has us written off but so far we’ve shown we’re not a walkover.  Arsenal may have beaten us but it was not easy for them and even though we lost I was very proud of them.  My own Fantasy Football team hasn’t had the best of starts either, but wait and see, it’s a long season!

I’d like to say a big thank you to Ray D’Arcy and his team at his TodayFM morning radio show.  Ray didn’t just let my story lie after the interview we did on the programme back in January, he and the team are in regular contact with us and we regularly update him with our progress – or lack of – in my “Fight for Life” campaign.  Regular readers of my blog know that when the time comes that my lungs succumb to MND I am determined to stay alive by means of invasive ventilation – a small operation that will allow a very similar oxygen machine to that which I currently use at night, to mechanically help me breathe all the time as used by fellow Motor Neuron sufferers Professor Stephen Hawking and the film director and author Simon Fitzmaurice. 

Anyway, Ray has been trying since meeting us, to try and get someone in a position of some authority at the HSE to speak to us – something that the HSE themselves have promised numerous times in letters forwarded to us by politicians, and by TD Alex White in parliament, but have all proved to be just empty words.   We have, thanks to Ray, been visited by the Patient Ombudsman who listened carefully to my story and future wishes as told to him face to face by Neil and me, and we’re now waiting further contact from him once he has fully investigated the situation as it relates to me. 

Thanks also to Ray D’Arcy for taking a bucket of ice water for me…  That’s about as close to the Rose of Tralee as I will ever get!

I have really missed the beach this summer, but wheels on sand are a no-go.   But now that the extension is in its final completion stages, I’ve taken delivery of my new Storm 4 electric chair.  There’ll be no stopping me very shortly… 

Finally then, just a quick update on where I am now:  the disease has been relentless as usual and I’ve no use of virtually anything now that I took for granted before, except my right hand – with which I am hand-writing all of this in bed so that Neil’s got something to type up for a couple of hours!  My left arm and hand went over the last six weeks, my right arm followed rapidly but the hand and fingers are still doing what I ask them to – albeit quite weakly.  My neck is now also very weak and my head seems to weigh an awful lot as I find it increasingly difficult to support or move it.  Speech, and swallowing, is now pretty much impossible but I’m getting to grips with the Eye-Gaze technology and as soon as we can get installed in the new extension things like that will become much easier to use - given the new space and room for proper equipment facilities.  

But believe me when I tell you that, despite the above, it’s definitely not doom and gloom here in Co. Wexford.  Neil and I, and my family and friends, always make sure there’s time for a laugh and a smile!  Let’s hope that my next blog will be written from the comfort and ease of the new room.   I’ll try to not leave such a long gap before the next update but in the meantime don’t forget my Facebook group where you’ll find more updates between blogs.

‘Til next time

Ciao!

Eimear X

Part 11. Technology, Tubes and Tradesmen

What a busy two weeks we’ve just had.  It all started with a nice man called Alex arriving from the CRC (Central Remedial Clinic) in Dublin.  He brought me my new Eye-Gaze computer, kindly given to me by the IMNDA (Irish Motor Neuron Disease Association).  And what fun we had the first day we used it!

Alex got me to type some short sentences with my eyes and then to use the “speak” button.  I decided to try out the first ones on Frank the Dog but as the computer has not had my own voice put on it yet, Frank was not very impressed and paid no attention to what I was saying via the computer.  And Neil was laughing, so I decided to get my own back on him, and I typed “Sit, Neil” and pressed the speak button.  Needless to say, Neil was not very amused…

After about an hour I had to stop as my eye muscles had never had such a long work-out.  Since then I’ve spent time putting together more sentences and adding them to the databank – things like “Crystal Palace are great, Chelsea are second rate”, etc.  It’s going to take quite a while to get used to this Eye-Gaze, but I will master it and will have the strongest eyes in Ireland.  I wonder if there are any Olympic sports I could enter with my strong eye muscles? 

The “new” belly button (peg-feed tube) I had been given was unfortunately too small/tight and was giving me a lot of pain so I went back to Beaumont Hospital in Dublin and a new one was put in.  Very strange being wide awake while someone is putting wires in and out of a hole in your belly!  I am happy to report that the new one is working fine and causing me no pain.  What a relief. 

It’s been quite hard to get used to living on a building site but it’s very, very exciting to watch the new bedroom and wet-room taking shape.  Michael the builder and his dad Mick have been really, really good:  having spotted the big pile of fence posts that we bought two years ago and never got round to doing anything with, thanks to Mick they are now up - and even painted!  They are also going to build me an extra ramp not in the plans and a patio so I can enjoy the garden.  And Mick’s bringing a regular supply of free-range eggs from his own hens at home!  What great builders, and men, they all are. 

The extension is now almost at roof height, the roof trusses and roof itself have been ordered, as have the windows.  We will have to move the Sky dish very rapidly or Neil will be watching the world cup in the pub!  I think Neil’s head is about to explode with all the instructions I am giving him about moving things about and the good thing is, I don’t have to do any of the cleaning or housework…  Everything has a silver lining – even MND!

Another new toy just arrived this week for my “new” belly button: a feeding pump.  Now while I’m asleep I get fed.  It’s very strange waking up with a full tummy!  This way I get all the vitamins, minerals and proteins that I need, so I can supplement it with whatever I like, like Ben & Jerry’s Caramel Chew Chew ice cream. 

We both thought that the new disability adaptation-extension was going to be really big – until when you think about all my equipment, and then it seems to shrink.  It’s going to be so much fun telling everyone what to do when it comes to painting it, etc, and not having to lift a finger! 

Neil is turning into a proper little housewife – it’s a pleasure for me to watch, but I can’t get him to wear a pinny…

More soon, thanks for reading, and don’t forget my Facebook group page where you can keep up to date with lots of photos and stuff.

Ciao!

Eimear X

Part 10. The people who made me

Now I think its time to tell you all about my grandparents as they were amazing, and Mum and Dad’s side were so different.  I only ever knew Dad’s mother but have heard so many stories about the rest that I’ve done some research and have quite a bit of info - and how interesting it is…

I will start with Mum’s dad, William Henry Jones from Brighton in England.  William was a Lance Corporal in the Connacht (Connaught) Rangers, a part of the British Army that was based in Ireland.  He was stationed in Galway in Bothormore Barracks and would have spent some time in Mountbellew as the guest of Sir Henry Christopher Grattan-Bellew, 3rd Baronet who was also a member of the Connacht Rangers at the time. I discovered that William’s father was also William Henry living in Brighton and working as a bricklayer and married to Lucille.  Grandfather William had one younger brother called Henry, and sadly we have no more information on them as somehow when William married my grandmother he lost touch with his family, and that was that.

William was, by all accounts, a brilliant musician playing the double bass, cello and violin.  I know he spent some time abroad with the British Army going to places like India, Egypt and Kuwait.  He also arrived in Suez in 1918 and took part in the Palestine campaign ending the war at Nazareth Palestine.  How amazing that must have been - and then he came back to Ireland to a country in turmoil.

Mum’s mother was Norah Devaney, daughter of Patrick Devaney.  Patrick was a coach driver for Sir Henry Christopher Grattan-Bellew and Norah Devaney was housekeeper to Sir Henry Christopher Grattan-Bellew.  So my grandmother would have been born and grew up on the Grattan-Bellew estate.  The Grattan-Bellews were Catholic landlords, very rare at that time, and were known to be very good to their staff and the people of the town.  I have been told by my Mum’s sister - my Aunt Josephine - that Sir Henry bought the house my grandfather and grandmother moved into when they married so that my great grandmother would have a home when she retired from work.

It’s easy to see how my Mum’s parents would have met, but it would have been very hard for them.  Ireland at that time was a very different place to now; he was a Protestant and she was a Catholic - and he was a British solider, a member of the occupying forces.  To my mind they must have been very brave.

Now to Dad’s family:  Dad’s dad, my grandfather on this side was Leo and we can trace his family forebears back to 1799 at Westport Co. Mayo.   It was no surprise for me to learn that on the 1901 Census of Ireland that the then16 year-old Leo was listed as a plumber, as indeed my own father became!    Grandfather Leo’s brothers were part of an important time in Ireland’s history…

Ralph (who my father was named after), John and Francis – and probably Leo too – all played a part in the 1916 Easter Rising in Dublin, and we know for a fact that Ralph was in the GPO building on O’Connell St.   I can’t tell for definite if the other brothers were, but all of the stories that we were ever told had them running guns in a baby’s pram and being very involved in all the activities all over Dublin on that particular week.  Their involvement continued for the next few years working with Michael Collins.

When the treaty was signed with the British government, the brothers were on the side of “no” to the treaty.  I’ll stop boring you with a big history lesson but my vote has always been with Michael Collins and what he stood for – which would have made steam come out of Leo’s ears!   Ralph went on to be one of the founding members of a well-known political party that I have never voted for.

My grandfather Leo’s father was also called Leo and was a commercial traveller according to the 1901 census.  And his father was James John Lynch but was known as Leo – confused?   He was born in 1860, and his father was John Lynch, born at Westport Co. Mayo on Christmas day 1799 and a landscape gardener both in Ireland and the UK at Kew Gardens.  He didn’t marry until he was 50 years old, and after giving birth to 10 children between 1850 and 1866 his wife Mary died at the age of 45.   John’s father was a John Lynch about whom we have few details date-wise.  What we do know is he was a gentleman farmer who lost his land to Lord Sligo.  He believed his land was taken unlawfully and took legal cases to the House of Commons in Dublin and the House of Lords in London – unsuccessfully.  This would have been some time around 1750/60.

So, as you can see on my Dad’s father’s side the history is very interesting…   I’m afraid I’ve very little information about my Dad’s mother other than she was born in 1891 as Gertrude Byrne and by 1901 when she was 10 both her parents were dead as her brother Andrew was listed as head of household aged 23 in that year’s census.   They were living in two rooms on Upper Clanbrassil St. in Dublin.   By 1911 they had gone up in the world and moved to a house in Rathmines, Dublin, and 21 year-old Gertrude Byrne was working as a ladies tailor.  I’m not sure when her and Leo met or married, all I know is my father was their fifth child and born in 1922.   And my Nana Gertie (as she was known to us) died when I was about 11 – so she lived to a good age!

Looking back on all that I’ve just written, it’s amazing to think that gun-running rebels and fighters all ended up being connected to a British soldier and a family in service!

My father Ralph as a young man was working on the building of Merlin Park Hospital and went to dances at the Seapoint Hotel in Galway.  This was where my grandfather William played in, and was leader of, a band.  William asked his daughter Catherine – known as Kitty – to come and help out, and that is how my Mum and Dad met.  Apparently he had to chase her for a long time before she would go out with him, and the rest as they say, is history! 

Both Mum and Dad have now left us but as I’ve mentioned in a previous blog, I had the best childhood and would not swap any of it.  Mum and Dad were the best – here’s to you Ray (Ralph) and Kitty (Catherine).

More soon – and there’s lots happening with us in the here and now…  Don’t forget to join my Facebook group where there’s lots of photos and news items, plus if you’ve not already seen it there was a great feature in the Sunday Independent’s Life magazine last Sunday.

Ciao!

Eimear X

Part 9. Lucky to be living in Wexford

How lucky I am to be living here in Wexford because I really believe if I was still in Dublin I would not be getting as good help from local services as I am getting here.   I am not able to name the people who help so I will give them all pen-names, and they will all know who they are should they be reading this.

I would have to start with “Laura” my wonderful physiotherapist who has been with me since the beginning of all this - when we thought it was something that could be fixed.  It was me and Laura meeting every week, doing our exercises, and it was her urging me to call and get the doctors to see me sooner which led to my eventual diagnosis .  What a huge help she has been, always full of encouragement, and Laura helped me to stay walking much longer than the hospital team wanted.  She has also done referrals to lots of other services.

So I had an Occupational Therapist (OT) before diagnosis who we will call “Marie”.  Marie was a great help with practical things around the house, and once I was told I had Motor Neuron Disease she passed me over to the Palliative Care team (yes I hated the word “palliative” too when I first heard it, but it’s about living the best way possible).  My new OT from Palliative Care we will call “Beth” - someone else with a very positive attitude right on my wavelength - and when Beth calls to the house it’s not all business…we manage to have a great laugh too!  Marie used to call us “MacGyver” as we always seemed to find ways to overcome the latest difficulty we had, and she always said she was trying to keep up with us.

We have wonderful district nurses who we will call Victoria, Amy and Gina who call in all the time.  Especially Amy who we see every week; again, it’s not all about MND - we chat about lots of different things and laugh.  I also have a dedicated Palliative Care nurse.  I know, there’s that word again, but its about pain relief and management, and believe me that is important.  I am allergic to morphine so will never enjoy the only legal high…had it once and had to be resuscitated - the after-effects of which are not pleasant!  As well as being in dire pain because they give you Narcan to nullify the morphine; not a situation I ever want to be in again.

You’ll already know from a previous blog about the progression from one boot to a pair, then crutches, then finally the wheelchair.  I now have my third wheelchair: this one is a super-duper one tailored not just to fit me, but to fit around as best as possible our house between the lounge and the bedroom.  We will be breaking ground on our extension very soon which is going to give us a new bedroom, a wet-room and a bigger lounge.  I will also have a new ramp for access directly into the extension.   When this is built I will be able to have the new Hot Rod that is waiting for me in a warehouse, but until the extension is finished there has been no point in having it as there’s simply no room, no access and nowhere for me to go on it.  My Hot Rod will run on batteries and Neil won’t need to push me around any more.  And I will have to find someone to sign-write it for me.  Can anyone help me with this?

I’m really, really looking forward to the wet-room so I can at last have a shower after 6 months of not being able to get in our existing shower.   Bye-bye bed-baths…soon!

I wanted to write all that just to recognise how right this country can do things on a local and personal level.  Unlike my experience of the government and the head office of the health service who don’t seem to understand a simple question.

With the help of my friends lobbying politicians, a local TD (MP) raised my issues in parliament, for which I thank him.   However the reply he got from the Junior Minister for Health was not an answer to my question whatsoever, but a lot of spin!   He didn’t tell me anything I didn’t already know; in fact it was a condescending and patronising answer mostly not relevant to my question.    And I quote him:

“Motor Neuron Disease is a complex and challenging condition. The diagnosis, treatment and care of individuals with motor neurone disease requires input from a wide variety of services, ranging from GP and community services through to acute hospital and specialist disability services.

“I understand that the individual at the centre of this case has complex needs. The HSE has advised that numerous multidisciplinary meetings have taken place to try to ensure appropriate care for her. She is currently receiving Continuous Positive Airway Pressure Therapy at night time provided by HSE community services.

“The HSE is continuing to explore all options for this patient’s future care. The HSE remain available at all times to discuss these issues directly with the individual and her family.

“The HSE advises that the question of whether a patient can access home ventilation therapy, whether invasive or non-invasive, is not purely a financial issue but must be considered across a number of dimensions, including:

�        A proper discharge care plan, which is discussed between the hospital consultant team and the appropriate primary or community care team, needs to be agreed and activated to ensure the appropriate setup is in place and can be sustained to meet the care needs of the patient over time.

�        Home ventilation needs appropriate equipment, trained staff and both patient and family education as well as arrangement for upkeep and maintenance of such ventilation equipment.

�        Nurses supervising such patients at home need to be appropriately qualified and competent to supervise the patient clinically; and

�        A commitment to provide the necessary financial resources to support the care arrangement into the future.

“As I mentioned earlier, this patient is currently using non-invasive ventilation therapy in the home and I understand that there is currently no clinical indication for full mechanical ventilation in this case.

“However, the HSE has advised that this case will be kept under review and should a requirement for invasive home ventilation therapy be identified for this patient in the future this matter will be considered by the relevant hospital and community services.”

NOWHERE has my question been answered regarding Invasive Ventilation at home.  Who IS/ARE this HSE?  WHO is making the decision?  WHO is available to talk to me?  HOW do I contact someone of influence?  The idea of leaving the decision about Invasive Ventilation until it “is indicated” – or in other words I need it – is a ridiculous notion.  They won’t be sat around a table having tea and a discussion when I am gasping for my last breath!  Is it just me, or does it seem ridiculous to you too?

I have now been forced to write another letter which my friend Elaine has elaborated on, on my behalf, and she has sent it to all the relevant politicians once again in the hope that we get a PROPER answer…

It looks like this:

CONCERNING: EIMEAR LYNCH-ROWE

Dear Minister Reilly

Firstly, I would like to thank you for your attention to my initial contact regarding Eimear Lynch-Rowe and her situation due to Motor Neuron Disease and in particular to the detailed response which you sent to me last week. I would like to advise you that Eimear and her husband Neil have requested that I act on their behalf regarding correspondence with TDs and the Dail.

Since my initial email at the beginning of April where I approached all TDs and Ministers advising about Eimear’s condition and situation approximately forty members of the Dail have raised questions directed at you, Minister White and the HSE. It is clear from the responses received to date that Eimear’s case is receiving attention. However, the question which Eimear needs an answer to has not actually been addressed.

Writing on behalf of Eimear and her husband Neil, I can advise you that they are increasingly frustrated to see that they are not the only ones ‘fobbed off’ with what are essentially mere platitudes and stock responses. Consistently they have received stock replies regarding the issue of home ventilation – that whether it is invasive or non-invasive it cannot be considered in isolation and whether the patient has access to such treatment is not purely financial.

Eimear and Neil are, naturally enough, very aware of the need for a proper care plan to be in place, the need for equipment, the need for staff training and family education as well as the necessary qualification of supervisory nurses. It is rather patronising to think that the individual who is actually living in these circumstances, living with such an aggressive and rapid form of Motor Neuron Disease, would not be aware of her needs. To receive this stock response from yourself, Minister White and the HSE in these desperate and tragic circumstances is both increasingly frustrating and unnecessarily upsetting.

What Eimear actually needs to know is that the Government and the HSE will respect her wishes and her right to life as and when her rapidly progressing MND reaches the point of making her lungs no longer able to function – either independently or with non-invasive ventilation.

Eimear is fully aware that she does not need this treatment right now, she does not need it today. She is trying to preserve and protect her future whilst she is still able to. She is attempting to establish that she will be able to have her future, to have her right to life, and she needs to do this now, before she will no longer be in a position to fight for what she needs.

In direct communication with Eimear yesterday I was asked to forward the following to each TD who has responded to me:

“I am amazed and upset that no-one I have contacted seems to have understood or grasped the simple ambition of my first communication.  So let me simplify exactly and unequivocally precisely what it is that I want.

“When I first raised the subject of Invasive Ventilation with my consultant Professor Hardiman last December (2013), I expressed clearly my wish to stay alive via this method as and when the time comes.

“She told me no.  Professor Hardiman said that the HSE would not sanction this on cost grounds, and reiterated this position when I asked again in February.  On the latter occasion she gave a much clearer indication that this decision was one of cost.

“Since taking my very personal campaign and ambition into the public and national domain, I have had many replies and statements using the arguments of ethics, cost and quality of life.  Each of these arguments can be dismissed with one fact:  that the HSE itself employs Dr. Tim O’Brien who also has Motor Neuron Disease and has been living on Invasive Ventilation for at least 14 years.

“At this stage, having heard my situation raised in the Dail and had many replies from various politicians and HSE employees, I am very tired of the pat reply that “Invasive Ventilation is not indicated in (my) case at present.

“Of course it isn’t.  But it WILL be, and given my most rapid and aggressive progression of Motor Neuron Disease, it WILL be indicated very much sooner, than later.  And at that stage I will no longer be in this now failing position to fight for what I want, and what is my right, when that time comes.

“So in very plain English, this is my question:

“When the time comes, and when it is necessary, will Invasive Ventilation be available to me, and if not, why not?

“And I need this question answered URGENTLY.”

At this point in time, you have advised in writing that the HSE is keeping Eimear’s case under review and that you have undertaken to keep the chief whip appraised of any developments, requesting that HSE officials meet Deputy Kehoe and Ms. Lynch-Rowe to discuss progress. Whilst this is most definitely a step forward, in that Eimear’s case is currently flagged, what she needs is not for her case to be kept under review whilst she waits for the inevitable to happen.

What she needs is proactive recognition from the HSE, her hospital consultation team and her primary/community care team. She knows her illness means her lungs will fail. Her hospital team know her lungs will fail. Her primary/community care team know her lungs will fail. She needs her support structure to plan for this now, to know what her future shall be now. Not when her lungs fail.

I would like to thank you again for assisting myself, Eimear and her family in this matter so far, and for continuing to support and assist us in her fight. I would ask that you would ensure her question is actually answered by the HSE on this occasion. 

Yours sincerely,

Elaine Daly.

Someone should have warned them that I will NOT stop shouting until someone hears my voice….even if it’s a computer generated voice!

There’s more new (and old) pictures in my Facebook group – please join it.

More soon.

Ciao!

Eimear X

Part 8. Helmets, heroes and hounds!

My mantra has always been “I am not a girly-girl”.  This probably started way back when I was about 4 and wanted to be a boy and would only wear hand-me-down clothes from my older brother, and not clothes from my older sisters (sorry girls but I would never have worn any of your clothes).  I always hated skirts and except for a very brief period in the 80`s where I wore what you wouldn’t really call skirts - maybe ‘long belts’ - sneaked out of the house in a bag and put on in a friend’s house.  My father would have had a fit!  I never did high heels, and with the exception of work, the wilder my hair the better.  This stemmed from having constant helmet-head - all you long haired bikers/racers will know what I mean.

I remember my confirmation suit when I was 12:  mum brought me to a department store to get something special, she kept picking out dresses and I just kept shaking my head.  And then I saw it - a three piece blue safari suit (I know, but remember, 12!).  It came with a jacket, a skirt and pants, something to keep both Mum and me happy.  I wore the skirt for the church bit and the minute that was over, straight back to the house, quick change to pants and off to enjoy the rest of the day.  I’m very sorry there’s no photos of this available – hahaha!

One of the hardest things has been clearing out my wardrobe as lots of my clothes and shoes/boots are not suitable anymore. My nieces were all amazed at how un-lady like and retro my clothes were, and delighted to help themselves.  Take away the suits from work and it was all jeans, shirts, dungarees and denim jackets.  I have kept a few of those and two ball gowns both worn only once (yes I gave in twice and went to the ball like a princess and did not turn into a pumpkin at midnight) . I had my hair cut very short in January and hate it, and just want it long again.  So if you see me in the near future and I am wearing a hat, you will know why.

Neil did not see me in a skirt until the MND made me have to wear them for a while - thank God it’s back to jeans now when we go out.  I am also happy to say I have knitted two jumpers for Neil but you will have to ask him if he is happy to wear them.

I have always loved sport, starting with football - being a Crystal Palace fan since childhood (go the Eagles all you non-believers, yahoo we are staying up).  My brother Andy went to a school where they played rugby so had to cheer on the team even if my brother was not on it.  I have been able to swim all my life as far as I am concerned, as I do not remember learning, and I swam for the Dublin Swimming Club and also the Dundrum Swim Club as well.  My wonderful Uncle Barry was a coach with the Dublin Club and I always loved the training sessions as we got to hang out with our cousins too.  When I was not swimming I was running for Dundrum Athletics and also playing basketball in school - even managing to throw in some Irish dancing too!

God it’s amazing how much energy you have when you’re young…  I think a switch goes off in your head when you hit about 17, or in my case you discover boys, and suddenly need all your spare time to go to clubs etc - so no more running or swimming.

When I got my first job as a commis chef in the Green Isle Hotel the lads used to say “Eimear is the only girl in Dublin with two backs” and all because I dressed in jeans and hand-knit jumpers that did nothing to emphasise my figure.  Yes, I did knit - my guilty secret.  And then when I got my first motorbike, my leather dungarees and leather jacket, they were convinced I was a boy with long hair!

So, as mentioned previously I love soccer, rugby, formula 1, motorbike racing, Tour de France (yes I know about the drugs, but having driven one of the stages in a car I’m amazed that they’re not all on drugs!), GAA, and nowadays I am happy to add Hot Rod Racing to the list.  I have been to lots of Isle of Man TT races and I have marshalled motorbike racing at Mondello Park.  I have been to Selhurst Park to watch the Eagles and have been in the stands and shouted at the TV for lots of other football, rugby and GAA matches. I have never been to a Grand Prix but would rather watch on TV, though I am happy to say I have been to watch National Hot Rods in Tipperary, Northern Ireland, Scotland and England.  I still get up at silly o’clock to watch the Grands Prix live and am looking forward to the football world cup in Brazil. I also hope to get back to Northern Ireland soon to watch some more Hot Rod racing.

My hero is Joey Dunlop:  a hero to me not just because he was a brilliant bike rider and racer, but because of what he did out of race season.  He would fill his truck with medical supplies and food (most of which he bought himself) and drive across Europe to orphanages in Romania and other eastern block countries, and never spoke about this side of his life.  That to me is a hero.

I had the pleasure of watching Joey race and win many times, and the great pleasure of meeting him on the ferry from the Isle of Man to Belfast.  He was so nice and easy to talk to, we had a great laugh, and from that time to this I have had a photo of me and Joey on my bed-side locker.  This must be getting on for about 25 years now - it might seem a bit strange to some of you but perfectly normal to me.  Maybe there is some girl out there now who has a photo of her and her favourite Hot Rod driver on her bed side locker?  You never know…

I'm posting a scan of the very "bedside photo" of me and Joey in my Facebook group - and just to kill two birds with one stone, I knitted the jumper I'm wearing in the picture!

I have been playing Fantasy Premier League Football for the past 3 years and was so happy this year when I was able to put Crystal Palace down as my favourite football team.  I am doing crap again this season, never seem to pick the right captain, but just you wait:  one of these years I will beat you Frank the Dog (Neil’s team!). I play Fantasy Hot Rods too on Neil’s Hot Rod website, and have to say am not doing much better on that either this year!  Come on Chris Haird, you have been my Captain all year - I need some wins please.  The Super Six game where you predict football match results is going a little better, but I am never in any danger of winning the jackpot any week.

Maybe if there was a Fantasy Scuba Diver league or Fantasy Knitting league, I would do better.

Something else which most of you may not know; I spent most of my life terrified of dogs – big, small, did not matter.  I would never go near a dog and would walk miles out of my way to avoid one, cowering like a child if a dog came within 10 feet of me.  This was a fear that goes all the way back to a winter in the 1970`s when I was a small girl and an alsatian dog attacked me, and only for my heavy winter coat I would have been torn to shreds.  So my fear was not some random thing.

So now we get to Frank the Dog and how he ended up living in my house…

So I met Neil, thought “he’s okay I’ll have some of that”, and then found out he had a dog!  Well our friendship nearly only lasted about an hour.  Neil had to very slowly help me get over my fear, and with his help I was finally able to pet a dog and allow him to come near me.  I have never let Frank lick me and never will, and I will never put anything into his mouth…all those teeth, far too scary.  My family were all amazed when Neil moved in not because a man was moving in, but because I was letting a dog in the house.  This was something that took all my brothers and sisters by surprise - Catherine did not quite believe it until she came home from Australia for Christmas last year and saw Frank the Dog for real.  All my family have been heard singing at some stage “it must be love love love”.  How right they are!  If you're not too squeamish there's a picture of mine and Neil's first "selfie" in early July 2011 in my Facebook group.

More soon...

Ciao!

Eimear X

Part 7. Working my way round the world...

Work - well, where do I start?  And I must say before I go on I have always loved my job.  I finished school when I was 17 and, having not liked it, did not want to go to college for more.  I had always loved cooking with my mother and have to say I learned so much from her, so it was decided that I would become a chef; a decision made between me and my dad.  He had lots of contacts in hotels being a foreman in a mechanical services company which did all the maintenance in PV Doyle’s Hotels.


I started my working life in The Green Isle Hotel under the guidance of Kenny Egan’s dad Paul.  On my third day a little man with a moustache came into the kitchen and said “Hello”, shook my hand and welcomed me to the job.  I had no idea who he was but it led to no-one speaking to me for weeks believing I was a plant, as it turned out it was PV Doyle himself!  I was the first girl to ever work in the kitchen who was not washing dishes, as my industry is full of men who think they know best.  Dream on, men!   No, I am not a raving feminist but women can be chefs too.


I went to college on a day-release basis every Thursday in term and did my City and Guilds of London exams.  When I was finished my training I got this mad idea to go to London; I do not know where it came from, I was 20 years old and knew no-one in London except my mum’s sister Lulu and her husband Dave - a lovely Yorkshire man.  I wrote letters to all the “posh” (remember I was 20) hotels and the Hyde Park Hotel wrote back and offered me a live-in job.  Bonus accommodation too, yahoo, I was sorted.  My dad travelled over with me to make sure all was okay and left after 3 days.  As a girl I was of course put in the pastry section along with all the other girls, only male chefs were allowed in any other part of the kitchen.  A German head chef and French sous chef meant fun times with communication…  I stuck it out for a month but realised it was not for me as I was never going to be allowed to work in any other parts of the kitchen.


As I am a female who does not know her place, I jacked it in and went looking for work.  I got a job in a pub-restaurant called The Shakespeare’s Head on Carnaby Street, which also came with accommodation so I was sorted again.  This London thing was proving to be so easy!  I worked there for the best part of a year, made some friends, and was basically having a great time - single girls about town!


After this year I decided to give working behind a bar a go, and with the help of a friend I got a job in a bar on Brewer street - and boy were my eyes opened to a completely different London…  Some of our clients were the girls who worked in the strip clubs and all were a great laugh.  Some clients were the owners or (a better word I am not afraid to say now) pimps.  And what a bunch of seedy weirdos they were - always offering me work, no thanks mate, I’m happy here.  It was a hell of an education but also great fun and I really enjoyed it.  Had my dad known any of this he would have been over on the first plane to take me home!


My London adventure had to come to an end as it was my turn to go home and help look after mum so that my sister Catherine could have a London adventure of her own:  Kew Gardens for her as she was working as a horticulturist.  Just so you all know, and not dwelling on it, Mum had early-onset  Alzheimer’s disease which she had from some time in her very late 40`s or early 50`s - we will never know.


Once home I secured a job with a corporate catering company as I liked the hours: 7 to 3, Monday to Friday, I could finally have a social life that did not happen on a Monday or Tuesday.  My more mature head also decided I could go back to college and get a degree in management by night, and I have to say I loved every minute of the experience.  I even got really sensible and started saving money.  My father was prompted one Sunday to ask “Who are you and what have you done with my daughter?  You are far too sensible to be her.”


Around this time I entered a chef’s competition – and won!  And it was none other than Jack Charlton who presented the awards and I’m posting a picture of me with the footballing legend on in my Facebook Group page. 


The only un-sensible part of me was the girl inside who loved motorbikes, and by the time I was ready to leave Ireland again I had worked my way up to a 350cc - all the better to mess with my poor dad’s nerves.  Can't find a picture of this bike, but I'm posting a photo of me with a previous bike on my Facebook Group page.


I spotted an advert one day in the newspaper for a Green Card Lottery for visas to America.  Yes please, I’ll have a go at that!  You needed to have a job to go along with your application and so I contacted my cousin Frank in Boston who got his Catholic priest-friend to give me a letter saying I was going to Boston to be his housekeeper.  As if!


The interview process was terrifying and you had to have a medical done which included an AIDS test.  There was no way I had it, but by the time the test came around I believed I had caught it off someone who sat beside me on the bus into the city… the worst thing was you did not know the results.  People were refused their visas on medical grounds and found out that way – mad, but who was going to argue with Uncle Sam?  Obviously I was granted my visa and off I went to New York in the pursuit of a job.


Well what an adventure my first NY job turned out to be.  I was working for an Irish bloke called Joe Burke who had a string of gourmet delis around Manhattan.  But little did we know he was always one step ahead of the taxman - some crazy stuff went on and I left there having learnt how not to do business. That is where I first met Robert Doyle (the man who never sleeps unless it’s at a night club), the best boss I ever had who became a friend - and we are still friends today.  I also ran in to Lorna Masterson whose sister I knew well and we are still solid friends today and always will be.


So I then got a job with a corporate catering group, again, handy hours Monday to Friday, and worked for them for about 2 years - going out every weekend drinking a variety of drinks…I loved Appletinis, shaken or stirred, I didn’t care!  On Sundays I used to go to a diner in Tribeca where after a few months I got on first name terms with Harvey Keitel which was very exciting for me.  I had lots of visitors from Ireland, and believe it or not I got fed up going up the Empire State building.  One thing I am glad about is that I have a lovely photo of me and dad on top of the World Trade Centre.


My family loved my trips home at Christmas as I always went mad buying presents - everything was so cheap, Levis $15 etc. Some of my nieces had lots of baby Dior clothes, it sounds so pretentious now.  I loved the shopping in NY and up to the beginning of last year went back every year at least once with empty suitcases to do more shopping.


I stayed in NY for 8 years working away and loving the night life.  Great restaurants, great bars, and the fact they loved the Irish - every March 17 we had to get pissed, it was a rule, and I swear the Yanks would say on that day only, “Look at that cute drunk Irish person!”  And we never wore green on March 17; we did not have to as we were 100% guaranteed Irish!


Some time in 1998 I got this mad idea to go to Australia and that was probably the most complicated visa application I think in the history of visas.  They wanted to know what subjects I studied in primary school - who remembers that shit?  So much made-up stuff ended up on the form.  But I was a shoe-in as my sister and brother were already Aussie citizens, so at the end of 1998 I made the long flight from New York to Brisbane.  The flight took 21 hours; now maybe you can help me figure out a puzzle no one has ever come up with a good answer for:  we left on Wednesday morning at 9am and arrived in Oz on Friday afternoon having only been in the air for 21 hours - what the hell happened to Thursday?


I was suddenly in a country where everything was okay next week, having just come from somewhere everyone wanted everything yesterday - it was mad!  I was convinced they were all on Prozac and swore every week “I am going back to NY; this is far too laid back for me”.  But then I discovered the ocean (as written about in a previous blog) and my life was changed forever.


Doing laundry was such a pleasure in Oz as your clothes dried in 25 minutes.  It was mad; you could not leave a thing on the line too long as the sun would bleach your clothes.  Something no-one told me about, and to me this was a very big oversight and was very important to intending immigrants - information needed to make up your mind as to whether or not you wanted to live in Oz.


Magpies:  the most aggressive ones in the world live in Australia, along with most dangerous snakes and spiders. I was cycling along one day minding my own business and a woman passed me pushing a buggy waving a branch over her head, and I thought maybe she was away with the fairies!  Next thing I am on the ground, something had hit me on the head - thank God I was wearing a helmet.  I was sure it must have been a branch or something but a woman came along helped me up and told me it was the magpies marking their territory, and if I wanted to cycle at this time of year I would need to wave a branch!  Well, needless to say the bike was put away for a few months as there was no fear of me ever doing anything like that.  Wave a branch, I ask you?


I spent almost every weekend in the ocean diving and saw the most amazing things.  After 4 years I decided it was time to go back to New York, but not before taking out Australian citizenship (just in case).   Not long after I got there 9/11 occurred; no need to go into that but it was a very bad time for all New Yorkers of many different nationalities.


Working again for a big company I ended up managing a restaurant in the Met Life Building so back to crazy hours but bonus:  we did not open Saturday night or Sunday – yahoo - social life!  And boy did we have fun: lots of different bars, and once a month a big gang of us would go to a different restaurant and spend the night making the drinks bill 3 times that of the food…but hey, we had fun.


Eventually life brought me back home where I was part of a team who helped to open (and work in for a while) Gary Rhodes' first restaurant in Ireland. I decided the long days and late nights were not for me any longer and ended up working for a corporate catering company as a manager - where I stayed until I could no longer work.  Also at weekends all this time I did work in a children’s hospital preparing meals for special diets and Bolus feeds for all wards.  I loved this work and it was a great way to put life in perspective that whatever problems you thought you had, nothing could be as bad as a sick child.


Little did I know then, that I would end up in Beaumont Hospital last week for an operation to have a PEG feed tube inserted into my own tummy which will be used for Bolus feeds for me when I can no longer swallow…  It’s like having a new, second belly button!  How funny life is.


Sorry this one has gone on and on a bit - but sue me, I had a lot of jobs!


More soon, take care and thanks for reading as always.


Ciao!


Eimear X